My daughter, Jenna, has lived with a transplanted kidney for nearly three years. We found her a living donor through social media. My sister, Bonnie, has been on dialysis for five years, and I am helping her search for a kidney donor. She has recently become a grandmother, and wants to be more involved with her family, and free of dialysis. In this article I will share what I have learned throughout many years of experience what is helpful to those of you who need a kidney transplant.
First, before any potential living donor can be considered for you, you must be evaluated by a transplant center to ensure you’re a good candidate for a transplant. Your healthcare professional can refer you to a transplant center for tests, or you can contact a local transplant center directly.
Getting waitlisted and approved for a transplant can happen before you start dialysis. This is known as a preemptive transplant. If your glomerular filtration rate, or GFR, is below 20, you can get worked up and begin the donor search. A preemptive transplant is a beneficial possibility, but it involves working closely with your transplant team, and a living donor, to make it happen. On rare occasions, a person will receive a preemptive transplant from a deceased donor.
The wait time for a deceased donor in the United States is three- to 15 years, depending on your location, blood type and presence of antibodies.
In 2019, out of every 98,000 people waiting for a kidney, 23,000 had received transplants, with 16,500 from deceased donors and 6,500 from living donors. And, in that same year, 41,000 new people were added to the national wait list. As demand for deceased donor kidneys far exceeds the availability, living donors are making a difference and saving lives.
People want to help, but don’t always know how. If you have kidney disease and are too sick or overwhelmed to explore donor search techniques, or don’t have access to a computer, ask for help. Have someone take photos of you and manage your Facebook posts. One person can check your emails daily, and another can post on your behalf on a social media platform, like Instagram. The more people on your team, the greater the outreach.
Multiple listing is when you are listed for a transplant at more than one hospital. This may be an option for you, but check to see if your health insurance allows multiple listing. If you’re waiting for a kidney transplant and don’t have high antibodies (your coordinator can tell you this), you could explore going to a transplant center somewhere other than in your procurement area to get listed to improve your chances of getting a kidney sooner. Check the wait times posted by the Organ Procurement and Transplantation Network, and view center information in other states, or research other areas in nearby procurement areas, at https://optn.transplant.hrsa.gov/data/. When called with a match, you must be able to travel to the center in a reasonable amount of time and be able to afford travel and lodging expenses.
Learn about living donation and be prepared to answer questions. Not everyone can qualify as a living donor. My advice is don’t ask anyone to donate a kidney. It can cause a huge amount of guilt if the person cannot do it. Instead, enlist the help of family and friends to help you search for a living donor. Discuss your plans to campaign with them. And if one of them expresses interested in being tested, provide them with more information.
If you have a friend or family member who is willing to donate but is not a match for you, a swap arrangement can be made through a paired donation. That can happen if you have a willing, but non-matching donor who is willing to donate to someone else on your behalf, thereby helping you to get a kidney from a different donor in return. Check to see if your transplant center participates in swaps. In my daughter Jenna’s case, she had high antibodies, and although numerous people were tested, it was difficult to find a good match. Gary, her swap donor, participated in the National Kidney Registry’s Advanced Donation Program and his kidney was flown to Colorado while my daughter received a voucher for a future match. When a suitable match was found, her kidney was flown to Los Angeles from Pennsylvania. For more information, visit the National Kidney Registry website. In some cases, you can trade up for a better matching kidney through an NKR swap, even though you do have a donor who is a match. It’s worth exploring your options.
What if no one comes forward? Stay open to possibilities. It gives you faith in mankind when strangers offer to help. You never know where your miracle may come from. Most searches won’t cost you any money. Staying involved by trying different tactics and reaching out could pay off in the long run.
Take photos of yourself, your family, and your pets, and write up your story. Explain your need, who can be a potential donor, how the process works, who to contact for more information, and how a transplant will impact your life. Set up a donor search page on Facebook. Search Google to learn how. You’ll give the page a name and select a page category, such as a cause or a community. Fill in the different sections, post this page link on your personal Facebook newsfeed and ask your page visitors to share your story. Jenna’s godmother shared our Facebook post about how Jenna needed a donor. An acquaintance read it and became the swap donor Jenna needed to get her transplant. For an example, see my sister Bonnie’s Facebook page.
Keep your page fresh and active. Add a few words, a new photo or a current event news story about donors (do this by creating Google alerts for “kidney donor” and “kidney transplant.”) For a relatively small investment, you can post a Facebook ad to reach more people. Target your ad to your local area, or wider if you can pay more. Select your audience by common interests. For example, people in the military, firefighters, animal lovers, volunteers, or others. Generous people from those categories offered to help Jenna. Join Facebook groups and see what others are doing to get help. Communicating with people on dialysis, or who have gotten a transplant, can be helpful. Knowledge is power!
Set up an Instagram account. The part of “social” in social media means you need to “follow” other like-minded accounts, and “like” their posts. That goes for Facebook and Twitter too. Reaching out to others on the same path will give you new ideas and support, and you’ll meet some wonderful people along the way. “Like” pages and accounts by searching for “need a kidney”, “kidney donor”, “living donor”, “kidney transplant”, and more. Some people who have shared their story on Reddit have found donors. Don’t just post your quest and wait for activity. Start a conversation, respond to questions, and share information. Create a hashtag like #kidney4bonnie, but search to be sure no one else has used it. Always include it, and be consistent with using the same name on all social media posts (such as Kidney Donor for Bonnie, for example).
Let your story be known. Email all of your friends, relatives, co-workers, alumni associations, fraternities/sororities, neighbors, and church congregations to notify them of your donor search and Facebook page. Ask them to pass on the message. They can share a post from your Facebook page, share your page name, share your photo and contact email, and provide a short bio. Contact church or alumni newsletters asking them to do a feature story on organ donation; perhaps they will focus on your search.
We printed fliers and business cards and a friend invited us to set up a table at a car show/carnival. My family talked to many people who didn’t realize you could donate a kidney to someone who is not a relative. Each outreach takes time and effort, but it might mean meeting the right person who can help.
If someone can put together a short video telling your story, post it on YouTube and share it on Facebook. TikTok videos or Instagram stories are other ways to bring attention to your quest. Keep them simple and direct, and always include your contact email and hashtag.
You can also post a plea for a donor on the Matching Donors website. There is a fee, but it may be adjusted or waived for those who cannot afford it. But first check with your transplant center to be sure they will evaluate donors found on Matching Donors.
I also posted on Craigslist in various cities and states, under Community, in the sub-section, Volunteers. Occasionally the posts are flagged for removal, and you would need to repost. The best thing that came out of posting was that a news journalist contacted us to do a feature story.
Try using white chalk for glass to write on your car windows, and on any car belonging to those willing to help you. We wrote, “Daughter needs kidney donor, type O”, and “Sister needs kidney donor, type O”, and included her email address. People took pictures of our car and shared them on social media. One woman tweeted a photo and it went viral; it was retweeted over 10,000 times, and our local evening news picked up the story. They aired it nationally, which resulted in thousands of incoming emails from people interested in living donation. Consider pitching your story to newspapers or TV news channels.
We also explored getting a billboard. I called Clear Channel and they offered to give us the nonprofit rate for 30 days if I supplied a hi-resolution photo and artwork. The goal of the billboard is not necessarily to find a local donor who may be driving by (although it could happen); the greater goal is that your local news channel may pick up the story, interview you and broadcast it nationally.
When I first had people interested in getting tested, our transplant coordinator mentioned that many of these people weren’t healthy enough. Do your own pre-screening of potential donors. Only send forward the best possible candidates to be evaluated. Transplant centers have various criteria, so make an inquiry. In our emails and messages to potential donors, we included:
A person must be in excellent health, between the ages of 25 and 65. The following conditions MAY prevent a person from being accepted as a donor:
• Significant obesity (check an online BMI calculator)
• Positive HIV status
• A history of hepatitis
• High blood pressure or the use of medication for high blood pressure
Protecting donors while giving recipients a new start is the goal! Only the very healthiest people move on to donate. Ask your transplant center about how potential donors should contact them. If none of the above items are an obstacle, you can provide potential donors with your hospital’s online donor application, which will require your name and birthdate.
Use common sense when connecting with strangers on the Internet. It is usually too difficult, financially and logistically, to test donors who live outside the U.S. Most transplant centers won’t even test international candidates unless they are family members.
One word about buying or selling organs. It is illegal! Whenever I was approached by someone willing to sell a kidney, I usually replied, “It is illegal to buy/sell/barter/trade a kidney in every country in the world except for Iran. Black market kidney brokers will take your kidney and pay a tiny bit of what they promised. There is nothing you can do because you’re committing a crime. Please do not take the risk.”
Do not provide any funds to a potential donor in advance. The National Organ Transplant Act (NOTA) prohibits the sale of an organ by a donor for profit. That said, receiving financial assistance to cover costs associated with donation is permitted for reimbursement of expenses such as travel, lodging, childcare or lost wages. If the donor will be traveling to your hospital for testing and surgery, they might be eligible for donor grants and should discuss the options with the donor social worker or coordinator. You can help raise funds to cover these costs, but it is suggested that you hold off on fundraising until you know the donor has been medically cleared.
The best donor is a committed donor! The evaluation process can be slow and cumbersome and is truly donor driven. The donor will have their own coordinator at a transplant center where they can find out what tests need to be completed, when and how to get labs done, and what is required to keep everything progressing forward. To protect the donor’s privacy, the hospital will not discuss any information about a potential donor with a recipient. Any updates would have to come to you from the donor, so ask them to keep you apprised of the progress. A good resource for potential donors to learn about being a living donor is Living Donors Online.
Don’t give up! If you have questions or suggestions, email me at firstname.lastname@example.org. When you create social media pages, send me the links and I will follow you. Good luck!
Listen to the Podcast Tips to Help the Search for a Living Kidney Donor with Karol Franks
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